Dear Everybody,

Dear Everybody,

It's time to end stigma for young Canadians with disabilities

A REVIEW AND ANALYSIS OF THE IMPACT OF STIGMA ACROSS CANADA

We dedicate this report to all of the children and youth across Canada who have disabilities.

Table of contents:

Executive summary...................................................................................................... page 3 The girl who ate lunch alone: Jadine's story................................................................. page 5 Section 1: Childhood disability in Canada.................................................................... page 6 The day everything changed: Suzanne and Wesley's story ........................................ page 11 Section 2: Stigma...................................................................................................... page 12 Aware of difference and inclusion: Gavi's story.......................................................... page 19 Section 3: Key recommendations and actions for change.......................................... page 21 About Holland Bloorview Kids Rehabilitation Hospital............................................... page 22 Glossary and thank you............................................................................................. page 23 Endnotes................................................................................................................... page 24 Appendix A: Tipsheets............................................................................................... page 26

? August 2017, Holland Bloorview Kids Rehabilitation Hospital

Suggested citation for this paper: Holland Bloorview Kids Rehabilitation Hospital, Dear Everybody: It's time to end stigma for young Canadians with disabilities, August 2017, hollandbloorview.ca

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Executive summary:

Dear Everybody,

It's time to end stigma for young Canadians with disabilities.

In recent years, inclusion and diversity are taking centre stage in the media and in public awareness. For example, race, sexual identity, mental health, Indigenous Peoples' rights and history, and immigrant and refugee rights have advanced as meaningful social issues and a focus of public attention. That's not to say there isn't still much more work to be done and progress to be achieved on these issues ? there certainly is. Nevertheless, the first years of the 21st century have led to many exciting developments when it comes to expanding society's collective understanding of difference.

As Canada's largest rehabilitation hospital for children and youth with disabilities, we celebrate the increasing value placed on diversity. And yet, we have to ask, where do children and youth with disabilities fit into the conversation? How is it that they ? or people with disabilities in general ? have not yet been welcomed as a part of our society's growing acceptance of difference?* To be sure, there is some evidence that the public is showing more interest in disability issues. When stories about a teenage model with Down syndrome

"It really hurts when people just assume I can't do things, and assume that I'm less of a person than I am. Because I am lovely, for anyone that knows me..."

- Jadine, Holland Bloorview client, age 17 (see page 5 for Jadine's story)

at New York Fashion Week rack up more than a million views on BuzzFeed, Mashable, and social media,1 that means something. Still, positive examples of visibility such as this for children and youth with disabilities are rare.

Instead, young people with disabilities routinely face the consequences of stigma ? staring, whispers, name-calling, social exclusion, bullying, and outright discrimination ? and many of us take little notice. Many kids, and even young adults, are patronized or overprotected by others. School children are placed for "time outs" in closets2 or have their communication devices turned off by those entrusted with their care.3 Those who go to college or university may have

their accommodations questioned or struggle with a myriad of transportation, health, and other challenges. And once they reach adulthood, young people face lower employment prospects on average compared to their peers without disabilities. Those who do not work are often treated as a drain on society, rather than as people contributing their own strengths and uniqueness ? like anyone else ? to Canada's diversity.

This issue's time has come. It came a long time ago. Children and youth with disabilities face far too many frustrating, heartbreaking, or otherwise damaging barriers ? barriers caused, ultimately, by stigma.

* We of course recognize intersectionality ? the fact that there are many overlapping identities and related systems of discrimination. We believe that all people who struggle against stigma and discrimination are allies together.

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People without disabilities often possess extensive gaps in their understanding of disability, including the tendency to overestimate the negative impact of a disability and to underestimate how much those with disabilities value and enjoy their lives.

In this paper we examine stigma in detail, starting in Section 1 with a discussion about the rights of young Canadians with disabilities, and contrasting this with the realities they experience as a result of societal discrimination and stigma.

In Section 2 we provide a detailed analysis of stigma, including

debunking the negative assumptions about disability that many of us ? even people who consider themselves knowledgeable about disability issues ? possess, whether consciously or unconsciously. We'll see how people without disabilities often possess extensive gaps in their understanding of disability, including the tendency to overestimate the negative impact

of a disability and to underestimate how much those with disabilities value and enjoy their lives.

We conclude in Section 3 with a number of recommendations and actions for change for different stakeholders (governments, health professionals, educators, media, parents, friends, and classmates of young people with disabilities, members of the public, and other potential allies), which consist of the changes urgently needed if we are to begin addressing the unacceptable levels of stigma experienced by young Canadians with disabilities.

And we simply must address it. It's wrong. It's unethical. It's a rights issue. And it's time ? way past time ? for change.

Disability and language

Decisions around the use of language to describe disability require thought and consideration from all of us. In this paper, we use person-first language, which identifies the person before their disability (e.g., "person with a disability" rather than "disabled person" or "child with autism" rather than "autistic child," etc.). However, we recognize that not every person with a disability wants to be identified this way or even uses the term "disability" ? people self-identify in many different ways. We recommend personfirst language when talking about people with disabilities in a general sense.

When referring to a specific person or group, it is best to ask how they selfidentify and use that language.

We also recommend avoiding negative language that is hurtful, disrespectful and inappropriate, such as "crippled," "confined to a wheelchair" (as opposed to "uses a wheelchair"), "suffers from ___ condition," and "afflicted with _____." When speaking with and about people with disabilities, avoid language that implies disability is tragic or inherently heroic; always consider the messages implicit in what you say.

illustration speech bubbles

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"I'm realizing I want to educate people. I want them to think differently, so that's why I speak out now about my disability."

- Jadine, Holland Bloorview client, age 17

Photo: Jadine, Holland Bloorview client, age 17

The girl who ate lunch alone: Jadine's story

"There's not one day where I don't sit at lunch alone at school because nobody wants to sit with me," says Jadine.

The 17-year-old student is surprisingly calm and matter-of-fact describing the isolating scenario that's been playing out in the first semester of her grade 11 year. Picture a high school cafeteria full of hundreds of kids, eating, talking, and laughing with friends. Then picture Jadine sitting alone in the middle of everything, in a spot reserved for her wheelchair at an otherwise-empty table. Day after day.

"People from my class always wave and say `hi,' but they never sit with me," she says, adding that at least in the second semester in grade 11 things got a bit better ? she reconnected with a friend who had lunch with her some days, so it was not quite every day that she was sitting alone.

Jadine is no stranger to stigmatizing situations; she faces them multiple times a day. "The biggest thing is, when people look at me with that look of, `Oh, poor you, your life must be so hard!'" she says. "I understand that my life is a bit harder than everyone else's,

but it makes me much stronger having to adapt. I have flaws like we all do. Just mine are more visible than most."

She also puts up with stares, looks of disgust, and hearing people talk about her behind her back. Sometimes people assume she can't understand them when she can, and talk to her as if she is five rather than 17. "When people see me, they just see the chair and don't realize that I actually have a brain and can say things and have feelings," she says.

So here's a dose of reality: Jadine is intelligent. Really intelligent, and articulate. She has wisdom far beyond her years, and a serenity and comfort level about her life that most of us would envy. She comes from a happy family with four siblings, her mom, and a large extended family. She loves swimming, is a voracious reader, and has her sights set on becoming a bestselling author one day. She wants to use her writing to become an advocate for "youth who are different and wonderfully made" (that is, youth with disabilities).

"I picture my life at thirty to be the most amazing life that anyone could ever live," she says, with considerable conviction.

And yes, Jadine also has a disability. Cerebral palsy to be exact, which affects her speech, her legs, and her upper body strength. She was born premature, 2 lbs., 13 ounces. A real survivor.

Jadine has been an inpatient at Holland Bloorview a number of times following surgery. "It becomes like your second home, because you never have to wonder if you're going to be accepted there."

So does stigma just roll off her now, given that she experiences it daily? "Believe me, it doesn't roll off me. But I'm saying it doesn't hurt as much when you expect it. It doesn't ever stop my day like it used to, or have me crying myself to sleep like I used to.

"Now it just makes me have a backbone, so I'm actually thankful. When people stare at me, I just smile and wave. And when people ask me questions, I answer, because I prefer they do that instead of making assumptions or talking to other people about me behind my back.

"I'm realizing I want to educate people," she says. "I want them to think differently, so that's why I speak out now about my disability."

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